amber rahim

Chronic illness: the parts we don't talk about

Category Archives: Family


by 4 Comments

Dusting off my soul

I have been all over the place this week: great heights and deep lows. I have been inspired and moved to write some good blogs yet it’s wednesday evening and I can’t bring myself to publish any of those posts.

I got introduced to the artist Piet Mondrian this week. Firstly by a wonderful friend Lana,(http://www.smarttinker.com) whose passion, to develop children as learners so that they can face anything life throws at them, is inspiring. Secondly by my brother in law Andy, who keeps his sanity with grace even though he lives with 4 of my female relatives (his wife and kids, my sister and nieces for those of you had a “say, what?!” moment there).

There is just something about art that lifts us out of the compactness of our lives and into a bigger space. A space where we can just be. We can appreciate or criticise. We can absorb or reflect. Most importantly for me, it takes us out of ourselves.

We often often forget about art, especially when the responsibilities of parenting and care-giving pile up on us, leaving us with little time to stand still. So I want to share some art here that I looked at today and invite you to stand still. No comment from me, just the artist and the pictures. I hope it brings you something. Share your thoughts in the comments. Or not. Take a moment out of yourself, maybe go and look at some more art.

“The purpose of art is washing the dust of daily life off our souls” Pablo Picasso.

Piet Mondrian: Broadway Boogie Woogie

Mondrian_Broadway_Boogie_Woogie

Piet Mondrian: The Gray Tree

Mondrian_gray_tree

Salvador Dali: Swans reflecting elefants

Swans_reflecting_elephants

Fayeq Oweis: No!

no2

Pablo Picasso: Violin and Candlestick

Violin_and_Candlestick

Last thing to say:  dear William, I am glad you are home.


by Leave a comment

End of the world?

Enders Game has been made into a film (Ender’s Game (2013) – IMDb) and I am not sure that I should go and see it.

I have read the book more than 30 times.  There is something about the tragic irony that keeps me coming back to visit.

I love the book, I know it well and I have a vision of what the characters look like, how they talk, who they are.

So, like all other lovers of books, I ask myself do I want to see someone else’s interpretation of it?

My expectations will never be met. I can’t even articulate all the things I would want there to be in the film to make it “right”.

Yet I am curious to see what they did with it. What did they leave out? Did they change the end? Will they get into the deep issues? Or will I be disappointed when it turns out to be a hyped up “he’s the ONE” film like The Matrix?

Whatever happens when I watch the film, there are two themes of the book that are particularly close to heart at this point in my life:

  1. Expectations for the future
  2. Controlling behaviour – how to influence and get the behaviour you want from people.  Sometimes, especially at bedtime, I wish I could control people, especially my kids.

Expectations

Growing up I had a vision of what my life would be like. Based on the wonderful example of my parents, I knew that my kids would be great: cheeky but obedient; responding to my brilliant parenting style; disciplined yet fun and loving.

The reality is nothing like this. Yes the elements are all there: I am loving, we have fun and use humour in a positive way and yes, there is discipline. Yet the shape and form of my life, how I am as a parent and what my children do… well, it’s not like the vision I had. The pictures don’t match.

For a start, when it comes to parenting, my husband and I don’t agree on everything (ok, this excellent opportunity for make up “activities” is not restricted to parenting. We disagree about a lot of things, but that’s for another day).

This is another way that the pictures don’t match:

Controlling behaviour

My children have a different interpretation of my parenting which I call “wilful misunderstanding”. They do not respond in the way I expect or hope for; they will not be controlled. They even dare to make their own choices and develop their own personalities. They do not listen to my wisdom and obey!

For example at bed time, my side of the conversation often goes like this:

“ok, another 5 minutes and then it’s time for bed” (yes super nanny, I listened to you and give them that time to adjust)

“come on then, brush your teeth and put your pyjamas on.” (imagine my firm and authoritative voice. Thank you mum, you showed me how that is done. That should work).

“Yes now!

good, you’ve brushed your teeth.

now get changed

Come on, get on with it!

…and without all that prancing about half naked!”

Quite some time later…… kids are in bed, books read, cuddles given.

“Ok, stop talking now.  It’s time to sleep”.

Sigh.

Mum, where did I go wrong? Wasn’t I always a wonderful child that did as I was told? (ok, don’t answer that).

My expectation of parenting did not come true but it is sweeter than I ever imagined it to be. I did not know that the same face that could make my blood boil in an instant could also melt my heart two seconds later.

I still dream that my parenting will be brilliant; that my kids will grow up to be happy and able to look after themselves and others. I dream that I am helping save the future of mankind.

So ok, maybe this film will not melt my heart and I expect some changes to the story will boil my blood, but it is just a film. It is only someone else’s interpretation of a book and it will not meet my expectations. But maybe I will like it anyway. If I don’t?  It’s ok, it’s not the end of the world.


by 2 Comments

Planting the seeds of confidence

This post is going to be a bit different.  It’s not about chronic illness and it’s not about struggle.  Something happened this week that made me happy and I want to share it.

In my first ever post I talked about my journey to finding my daughter, seeing the child behind the illness.  Ever since, I have been doing something more consciously and deliberately.

I have been acknowledging my daughter.  It’s kind of like a compliment but I don’t praise what she has done, I acknowledge who she is.  It goes something like this:

” You know, you are smart, you figure things out.”

“You are funny and cheeky”.

“You are intelligent”.

“Even when you are scared and nervous, you try new things”.

“You know what you want”.

When I first started doing this I was met with shyness, a shake of the head and often an embarrassed “stop! why are you saying this?”

It seemed too much for her and she got embarrassed.  I think this is something we all do when the attention is turned to us and who we are.  It’s so personal and we are not used to it.

As time went by she starting getting used to me doing this.  Then she started to ask me, shyly, to “do that thing, when you say stuff”.  She would smile, my heart would melt and I would oblige.  I was happy, she was happy.

I have been working a lot lately so this last Sunday when I was helping her get ready for the day I took the opportunity to acknowledge her.  It’s been a while.

I started talking and she started smiling.  Confidently.

The she spoke and blew me away.

“I know” she said.

We both grinned and hugged.

I thought “this is beautiful”.

So I have new definitions of beauty (to add to my collection).  Beauty is someone glowing with the confidence of knowing who they are.  Beauty is the connection created between two people when they share this knowing.

And I know that with a simple acknowledgement, by saying “you are …” you can help build self worth.

Yes of course she gets insecure or disappointed in herself but she also knows that she is smart, funny and brave.


by 4 Comments

3 important lessons for happiness in 2014

Happy New Year everyone!  A sincere and heartfelt wish for good health to you all.

I did not expect to write a “new years” themed post but life is full of surprises.

It wasn’t a good start to the year.  By last Thursday (only the 2nd day of the year) it had already become too much for me.

Normally I don’t like to stay up until midnight on New Year’s Eve.  I’m tired most of the time anyway and it just takes me too long to recover these days.  Plus, there’s something about having to stay up that I rebel against.

I stayed up this year as we were with family (it was a lovely evening) but by Thursday morning I was still recovering.  My daughter woke up around 9am feeling ill.  With terrible stomach pains, she was crying and throwing up.  As I tried to comfort her my mind ran through all the things it could be:

  • Stomach bug
  • Bleeding ulcers
  • All that Piri Piri sauce she ate yesterday
  • Bleeding ulcers!
  • Gastritis …. and bleeding ulcers!!!

I have a bit of a paranoia about bleeding ulcers.  You see, she is on a combination of meds that can cause ulcers.  She has already had severe gastritis because of her meds (age 6 months) and she is on an NSAID that is only for short term use (read weeks) because it causes ulcers and she has been on it for 6 years.  Yikes!

It’s a calculated and managed risk.  It saved her life in the early months, kept her out of hospital in the first couple of years and allows her to have a good quality of life now.

However, it is a ticking bomb that may or may not go off.  If she gets an ulcer she won’t be able to take this or any other NSAID for the rest of her life.  Muscle pain and need Ibuprofen?  No can do.  Quality of life?  Seriously affected.

So while all this is going on in my crazy, tired head, and I am trying to comfort her, my poor little girl is crying and asking for Dad (who was temporarily unavailable).

Brimming with frustration and impatience I just wanted to tell her to “stop it, just be quiet”.  (Well, I wanted to shout it actually and there were quite a few exclamations marks in my head too).

I took a breath, explained that her dad would be back in 2 minutes and that I needed to go to the toilet.  Then I left the room.

I stayed in the bathroom for a long time, much longer than necessary.  I put myself in timeout.  Her dad was brilliant with her; kind, patient, loving.  Just what she needed. I am so grateful to him because last Thursday I just couldn’t do it.

So these are my 3 important lessons for happiness in 2014

  1. It’s good to share the load.
  2. It’s better to walk away than say something you would regret
  3. Accept that Mummy time is never at a civilised time of the day (like 9am on a Thursday).  Kids want their mums at stupid o’clock times like 4am on Friday morning.  That’s when they want you to sit with them and hold their hand.  So I did.


by Leave a comment

What’s different about chronic illness? No.1: Sickness scale

It’s coming up to Christmas and I am taking 2 weeks off from everything.  My next post will be in January so with heartfelt gratitude I thank you for reading my blog and sharing this with me.

I invite you read my first blog https://amberrahim.com/2013/08/28/finding-my-daughter-behind-the-illness/ and with that spirit, enjoy the beauty of those in your life.  See them for who they are and cherish them.

Enjoy these last 2 weeks of the year and wishing you good health.

Sickness Scale.

My mother once gave me some advice for when your child is ill.  “Sometimes you just need to sit up all night with your children and hold them”.

I have found it to be true.  Sometimes your children are so ill that it comforts you both to do this: your child finally sleeps in your warm embrace and as a parent you are soothed by being able to give comfort.

But how long can you keep this up? One day, two?  Maybe even a week, if you take turns with your partner.  But what if they are sick for weeks, months and you just don’t know how long it will be before they are better?  You want to keep on holding them for as long as they need but when chronic illness is involved, your children are really ill, really often.  Their need for comfort is high and our desire to provide it is strong.

So you try to keep it up, you get tired and eventually a shift starts to happen.  They need to be more sick before you stay up all night.  It gets easier to go back to bed.

Your assessment scale for illness adjusts.

In the beginning they need to be on a 7-8 on the sickness scale to warrant an all nighter.  With a chronically ill child you will do the same.  Sickness level is 7-8?  Ok, stay up all night with them.  It’s the definition of that 7-8 on the sickness scale that changes, not the number.

If they normally throw up about 4 times a day, you notice when they do it 6 times a day and start to get worried at 8.  When they stop playing you know it’s really bad and maybe it’s time to go to the hospital.

(side note: yes, kids can throw up regularly and still carry on playing and having fun. My little champ has been doing it for years.  Well you can’t spend your entire childhood not playing!  Seriously though, I do not know how she does it.)

Your whole view of the world changes.  What’s normal?  What’s worth worrying about?  What’s serious?

From the outside we can seem callous.  “What, your daughter has just been sick and you don’t ask her how she is and give her a hug?”.  No, but I do teach her how to keep it out of her hair and off her clothes and shoes.   This is normal for her.  Do you pick up your toddler every time she stumbles? Or is that just normal?

When people don’t understand, and it is really easy of them to misunderstand, it can isolate you.  I don’t blame them.  When it comes to illness, there is little common ground between you.  With parents who also have a child with a chronic illness or people who themselves are ill, it is different.  It’s why we get on so well, even when we live on other sides of the world.  We share something that many of those around us don’t even know about.  We have a different sickness scale.

So next time you wonder “don’t they care?” or hear me say “she’s doing well”, remember: yes we do care and she is doing well, for her.

Our world is just a little bit different and you need to understand the context: our normal is not the same as your normal.  Take time to see us, really see.  You will see someone who says they are ok but is in pain.  That’s because they are ALWAYS in pain like this.  So yes, they are ok, but they are still in pain.

Take time to understand and let us in.  We want to connect with you.  We want to be understood.  We want to be seen.

So my mother is right.   Yes, I have just admitted that to the world, will I ever hear the end of it? (actually, I am proud to do so).  Sometimes you just need to sit up all night with your children and hold them.


by 1 Comment

What’s it like to get what you want?

Since I started writing this blog I have had great feedback from fellow sufferers and just fellows that I know.  There has been concerned curiosity and growing awareness of the reality of my life.

That was my intention and I am grateful.  So why am I finding excuses not to write?

“I’m tired today, I’ll write tomorrow” or “I have to do the laundry”.  Really? The laundry?

What I have come to realise is that I too am becoming aware of the reality of my life.   It’s not the hardest life on this earth but it is hard.

There is a lot of worry and there is so much to do that I get tired just thinking about it.

Yet how did I not know this?  How was I not aware?  I’m writing about it aren’t I?

I put it down to practicality, self protection and normalcy.

Practicality.  It’s my favourite mindset and perspective.  I just get on and do.  I plan, I act, I adjust the plan when it goes wrong.  I share the workload when I can and just get on with doing.

Self protection.  It hurts to think of my daughter being ill.  It hurts deep in my bones, all the way to the soft squidgy marrow.  I don’t like to stay with the hurt so I don’t.  Have I dealt with the hurt?  Yes.  I have had therapy. I’ve contemplated life, the universe and everything.  I know the answer is 42.  But that is the old hurt.  Every now and then there is new hurt.  Experienced by me as I am today, the person I am now, at 37.  Not the me of age 31, when all this started.

I have examined my faith in god and how can such a thing exist in the world.   The only answer I have to that is this: it just does.

I don’t feel guilt.  It’s a genetic illness inherited when both parents happen to be carriers and then only if the both sides pass on the mutated gene (25% chance of that, by the way).  It’s not my fault.

I don’t feel anger at god, at the world or at my husband for daring to carry the same defect as me.

I don’t dwell on how this could happen.  It is.

But there is nothing in this world that will make me feel ok with either of my children being in pain.  I’m not ok with it.  So I move away from it in self protection and for something more.  There is so much more in my life that I do not need to stay here.  It’s just a place to visit.

Normalcy.  This is normal for me.  Medicines, hospitals, constant monitoring for signs of an impending catastrophe.  This has been a dominant part of my life for 6 years so it is just “my life”.

Who thinks about the small details of their lives?

Well, a blog writer does.  So I guess you could say I have been hoist by my own petard.

(I just need to add that I love this phrase!  I have done ever since I first heard it as a child and now I finally get to use it.  Hmm, maybe I should have fallen in love with the phrase “richer than creosus”?)

Writing this post has brought me to this realisation: it’s not until we take a step back from our lives that we actually see what are lives are like.  You can’t see the wood for the trees.  So I invite you to join me and take a step back and look.

What do you see?

I see that my life may be hard, but it is also beautiful.  Deep down, I didn’t just want to share, I also wanted something for myself.   To see this:

Sometimes the beauty of my life is cold and bright like a crisp, sunny winters morning.

Sometimes that beauty is warm and comforting like a hot water bottle and a blanket.

And sometimes, that beauty is rough like a storm that buffets me around, battering at me, until finally it stops and in that calm there is satisfaction in knowing that I held on.  I am still here.  My life is beautiful.